Ginette from Oxford
On holiday about 11 years ago my husband was rubbing sun tan lotion into my increasingly large stomach and said to me 'this isn't fat; it's all hard and there's a large lump down your right side'. I had been feeling increasingly uncomfortable sitting down and when I bent over I couldn't breathe. I assumed I was getting fat, although I wasn't eating that much. I had also been having very painful periods, which were lasting 12 days.
I was very worried because I thought I had ovarian cancer and went to see my GP when I got back from holiday. She organised an immediate ultrasound scan and I was told, much to my relief, that I had very large fibroids, not cancer, but that they were enlarging my kidneys. My GP told me that the fibroids could be treated by surgery - hysterectomy or myomectomy (where just the fibroids are surgically removed) or by drugs, which put you into the menopause. I said I didn't like the sound of the drugs and didn't want a hysterectomy.
I ran a medical company specialising in radiology products. I had been very impressed by the interventional radiologists I had met and seen the excellent results of their work. I had seen a technique called embolisation to treat an aneurysm in the brain (a dangerous ballooning of a blood vessel), which previously would have required major brain surgery. I also knew that embolisation could be used to treat inoperable cancers. It cuts off the blood supply to the cancer so it shrivels and dies. I asked my GP if the same embolisation technique could be used on my fibroids. I was very lucky because she was one of the few GPs that knew about fibroid embolisation. She said that Dr Cowan at the Churchill Hospital in Oxford was working in this field.
I researched the various treatment options open to me on the internet and looked at the clinical papers on fibroid embolisation, hysterectomy and myomectomy, before I saw the gynaecologist.
I did not want a hysterectomy, because I thought they were not safe. The mortality rate from hysterectomy is unacceptably high, when fibroids are not life threatening. I was particularly worried about the very invasive nature of a hysterectomy, the long recovery period, the high risk of possibly fatal DVT and long term side effects -possible urinary incontinence and loss of libido and enjoyment of sex. Having researched the subject I felt that embolisation was what I wanted because it was much less invasive - no surgery or general anaesthetic was involved, there was only a 1 night hospital stay, only the fibroids were treated, the rest of my body would remain intact. I had a very senior and demanding job and would be back to work much sooner.
My gynaecologist told me I had at least two very large fibroids, possibly more and that my uterus was almost the size of a full term pregnancy. I had obviously had the fibroids for a long time. I particularly asked him about the effect of a hysterectomy on my subsequent enjoyment of sex. He surprised me by saying he didn't know. We discussed the options and I opted for embolisation.
Dr Nigel Cowan, Consultant Urogenital and Interventional Radiologist, Churchill Hospital, Oxford, carried out an MR (magnetic resonance) scan. This showed that I had four fibroids, two of which were over 10cm, about the size of a cricket ball and none were pedunculated (on a stalk), which would have precluded embolisation at that time.
Dr Cowan enrolled me into his clinical trail on uterine embolisation and he carried out my embolisation.
My recovery was eventful. Unfortunately I caught a flu type virus, which didn't help my recovery. I returned home the day after my embolisation with some aches and bloating and felt a bit fluey. I had embolisation syndrome,were you have a temperature, caused by my huge fibroids breaking down. I also had some very heavy bleeding for a couple of weeks.
After a couple of months I had some pain. I went to the GP, but they didn't know about embolisation. Then I half expelled a fibroid, but it got stuck. I was admitted to the gynae ward, where after some differences with the registrar, who wanted to give me a hysterectomy, the consultant said they would just help the fibroid out, under general anaesthetic. I had some infection, but the fibroid was successfully removed and the antibiotics cleared up the infection. I was glad to the rid of the fibroid, which after shrinking was still 15cm long! A few weeks later this happened again, without the infection and was pulled out - only 10cm. The third fibroid came out by itself at home and was only about 8cm - the little one. I was really pleased to be rid of three of them and I took it in jam jar to Nigel Cowan, who seemed pleased with the gift!
You may hear horrid stories about expelling fibroids, but it really wasn't traumatic. It wasn't painful, I didn't feel ill, I knew it might happen. In fact, because my fibroids were so large I was worried they wouldn't shrink enough, expelling them got rid of them completely.
Six months later I had another MR scan at the end of my treatment. The results were spectacular. Click here to see before and after scans. I only had one small fibroid left and my uterus had returned to a normal size. My stomach is much smaller, my clothes felt loose and I could bend over without feeling ill. My periods lasted 4 or 5 days and were not painful. I have no scars, as I've had no surgery. I felt better than I'd felt for years.
At 18 months on I felt like a new woman. I started playing squash again, my periods were hardly noticeable, as they were at school, there's not reduction in my libido, quite the reverse, and I looked younger and slimmer.
Now 10 years later I look back on my embolisation and it has been really successful. I can report that I did not suffer from early menopause, as I probably would have done if I'd had a hysterectomy. I have no scar. I am delighted that I chose this option and I would and have recommend it to other women, including close friends, who are also delighted with the outcome.
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Our Survey and Guidelines
Thanks to all who took part in our survey about the information and choices for their fibroid treatment. Please click here for the Patient Information and Choice Survey report and here for our report on access to UFE treatment with The Medical Technology Group and All Party Parliamentary Group on Improving Patient Access to Medical Technologies.
You MUST be offered an alternative to hysterectomy. Download the quick reference guide to the NICE guidelines.
Please download a guide for patients – Improving Your NHS: What you can Expect